DH Photo Bank

[squirmingitch]

We haven't heard from JaneWhoLovesRain in years now so I imagine she won't see your post.

 

As far as how long the Dapsone takes to give you some relief; I have never been on it (allergic to sulfa drugs) but from what others say it should start giving you relief in just days.

 

BTW, I've had on the back of both knees. In fact, I had it there long before I had it actually ON my knees.

[JaneWhoLovesRain]

Hi - I just happened to log in today!  When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone.  He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees.  I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t.

 

Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement.  I've never taken it though, so I can't speak from experience, just from what I've heard others say.

 

Jane

[Rita L]

These are pictures of my 4 year olds blisters 

Do they look like DH?

We have seen many Dermatologists and Allergists who said they don't know what it is but it looks like DH so we had a biopsy which came back inconclusive.

We have been Gluten free for 18 months but the spots keep coming, When she has Dairy or Soy she scratched all night even with Antihistamines.

 

http://www.flickr.com/photos/ethanhobbs/10848312076/

http://www.flickr.com/photos/ethanhobbs/10848415764/

 

 

I have been reading many posts and it seems the members here know more than the doctors we have been seeing.

 

if anyone can help me identify these spots I would be so grateful and relieved as the past 2 years have been super hard living with the night scratching and bleeding. 

 

worried mom 

The night itching is what got my attention. It's horrible. I just want to climb out of my skin! Looks like mine... I've been scratching so hard that I have bruises but mostly in my sleep.

[Rita L]

Hi - I just happened to log in today!  When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone.  He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees.  I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t.

 

Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement.  I've never taken it though, so I can't speak from experience, just from what I've heard others say.

 

Jane

I guess it's slowly reducing the huge red patch with blisters. I think the inflammation is from me scratching. The other side doesn't look half as bad. I was painting a ceiling and wearing yoga pants and I think sweating there so perhaps that's why it is worse than my arms. I have one little spot on both forearms that I manage to leave alone. Last night was my third night on Dapsone. Have seen just the slightest reduction in size but the itching is just as bad with the burning sensation as well. Thanks

[mendylou]

I have been gluten free for four years , I still have DH outbreaks but they are not as extensive as they used to be.  I do still wake up every nite with terrible itching which causes scratching to excess. The hot humid weather of summer makes it all the worse.  My worst areas are buttocks and forearms.  I have not had clear skin for at least 7 years.  I figure this had been building for so many years that it will take many years to disappear.  It does not seem to matter what I apply to my skin, nothing really helps.  I have never taken dapsone.

[learningtobreathe]

I'm so thankful to have found these photos and descriptions! I have had rashes like this on my abdomen, chest/breast area, and scalp. I thought I was going to go crazy; they itch and burn and fade and then would randomly return. I posted a bit earlier in another thread about a rash I had, but I wasn't sure it was related to my gluten intake. I'm much more confident after seeing these comments. I'm dealing with one right now, and I am breastfeeding, so the ones on my chest are really bothersome during that time. 

Thank you again for all of your helpful information. 

[Barbie Wickham]

On 11/21/2012 at 11:54 AM, sisterlynr said:

My scalp is covered especially back of head. I have some lesions on both knees, not as much as in these photos. The sole of my right foot is covered with lesions. The ones on my foot have healed and the skin has peeled off.

 

Trying to load the photos. . . we'll see if I can get this accomplished.

 

http://i1323.photobu...6/closerash.webp

 

http://i1323.photobucket.com/albums/u584/lindareading56/siderashclose.webp

 

http://i1323.photobucket.com/albums/u584/lindareading56/closerash1.webp

 

http://i1323.photobucket.com/albums/u584/lindareading56/lynupperbackrash.webp

 

 

I have been on Dapsone since October 20th and eating gluten free and iodine free (started on the same day) I have lost 25 lbs and my sugar level is much better.

 

I still have the itching, burning and stinging but is probably at least 75% better now.

I am a recently diagnosed & confirmed Celiac with DH. I had the Rash for 1 1/2 yrs with my bottom being the worst, then my elbows, hands, wrists & top of knees.  I started 50 mg of Dapsone a day (I too am allergic to Sulfanomides, but my pharmacist & Doctor researched the molecular components of Dapsone and both felt it would be ok to try and see if it would cause me an allergic reaction, they felt it would not, and thank goodness I tried it as I did not have any reaction, only some relief after 48 hrs) and I also went immediately to a gluten-free diet. I am about 6 weeks post diagnosis and I am about 80% cleared up. I’ve reduced Dapsone to 25 mg a day and am strict about eating gluten-free. I will try to post some more pictures, this site limits to direct posts so I’ll also try to use  photobucket. So far all of the pictures posted here look exactly like my rash and the descriptions of itch, weeping & popping blisters... sound like my own words. So very painful and the itch is just cruel! I never really found any topicals  that really helped, GoldBond with Lidocaine was good, Aquaphor (instead of Vaseline) was also good when sores dried up, and prescription Alvecyn (gel or liquid spray) helped to dry up and debride my skin. I lived on ice packs. Hoping everyone finds help and some relief from this intense, life robbing disease. You can see the fluid filled, oozing & bloody blisters that never would heal until I was dx’ed and confirmed as a DH Celiac and started Dapsone and gluten-free diet. 

[Barbie Wickham]

On 9/29/2014 at 3:39 PM, JaneWhoLovesRain said:

Hi - I just happened to log in today!  When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone.  He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees.  I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t.

 

Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement.  I've never taken it though, so I can't speak from experience, just from what I've heard others say.

 

Jane

MendyLou and RainJane, I got relief within 72 hours of starting the Dapsone, 50 mg a day and a strict gluten-free diet. After a month, I dropped dosage to 25mg a day am almost completely free of rash. Only a few bad,  stubborn blisters on my bottom. Best of luck to you. 

[54dx]

In may of this year, I suffered from the worst and most itchy rash ever! Started at the elbow, moved down to the hands, then to the legs and abdomen. It was awful, keeping me up at night; only ice packs relieved the itching. After several trips to dr, dermatologist, and allergist, I read this forum and I think I may have DH.  Although the derm did a biopsy, I don't think it was for this. I stopped eating all gluten and miraculously the rash started going away! After about a month, I was clear! I tried eating a piece of bread shortly after and ended up with a mouthful of canker sores. Since then, there have been a couple of times I've consumed gluten accidentally and each time I had stomach pain or digestive issues. I think I'm undisgnosed celiac! Is it worth eating gluten again to get a formal diagnosis? 

[Victoria1234]

3 hours ago, 54dx said:

In may of this year, I suffered from the worst and most itchy rash ever! Started at the elbow, moved down to the hands, then to the legs and abdomen. It was awful, keeping me up at night; only ice packs relieved the itching. After several trips to dr, dermatologist, and allergist, I read this forum and I think I may have DH.  Although the derm did a biopsy, I don't think it was for this. I stopped eating all gluten and miraculously the rash started going away! After about a month, I was clear! I tried eating a piece of bread shortly after and ended up with a mouthful of canker sores. Since then, there have been a couple of times I've consumed gluten accidentally and each time I had stomach pain or digestive issues. I think I'm undisgnosed celiac! Is it worth eating gluten again to get a formal diagnosis? 

Yes, if you will have a hard time for the rest of your life going without gluten on a "maybe". Many people can't be 100% compliant without a dx.

[sheronlyn]

I know this posting is old but this is the first time I've heardbeen that If a can take years to come to the skin surface. This is very interesting as my husbandphone has had terrible skin soresproblems, itching, stinging, burning in all the areas people mention but even more so. Dermos were no real help but after I insisted on an Iga test for DH they said it was negative and said to try yoga! Hubby cant take dapsone due to his anemia of unknown origin but, could be due to kidney d isease. He did try for a week but stopped due  worsening anaemia. Will llook into, theand iodine connection. I'm going to get him to do DNA testing for celiacs as we knowdidn't he's sensitive to itthe and it will bebe the best way to find out.

[cyclinglady]

2 hours ago, sheronlyn said:

I know this posting is old but this is the first time I've heardbeen that If a can take years to come to the skin surface. This is very interesting as my husbandphone has had terrible skin soresproblems, itching, stinging, burning in all the areas people mention but even more so. Dermos were no real help but after I insisted on an Iga test for DH they said it was negative and said to try yoga! Hubby cant take dapsone due to his anemia of unknown origin but, could be due to kidney d isease. He did try for a week but stopped due  worsening anaemia. Will llook into, theand iodine connection. I'm going to get him to do DNA testing for celiacs as we knowdidn't he's sensitive to itthe and it will bebe the best way to find out.

DH is celiac disease.  Did your doctor, even your PCP (Primary Care Physician) order a complete celiac blood panel?  

http://www.cureceliacdisease.org/screening/

[MelRock]

I am very new here and have only dipped into these photos. Thank you very much to every one who has posted!

However, I have not seen any photos of much scratched sores.  Mine started like many of the pictures here - a combination of red dots and/or clear bumps.  But I scratch and scratch and SCRATCH!  So that I have large raised scabs that refuse to heal and continue itching. Sometimes I deliberately  scratch around a scab so as not to irritate it and even then, with the skin unbroken and not bleeding, the "scab" seems to get bigger to include the area I scratched.

Have any of you experienced that?

 

Melissa

a scratcher

 

Edited July 6, 2018 by MelRock

[Iiv]

I'm going to post more pictures as a comment, due to limits in size.

I do not have DH, they insist I have atopic dermatitis by visual exams. But I thought it could be good to show other rashes triggered by gluten. Even though AD isn't supposed to be caused by allergies, it's clearly mine is. But mine is severely triggered by gluten.

Background. I've had rashes my entire life, more or less. Less as a teenager. But still felt it 24/7.... until I had been 8 months without gluten. I have never had as good and smooth and strong skin ever before than shown in "completely clean". I didn't notice any improvement in rashes before 6 weeks had passed. I never thought my rashes was connected to gluten, so it was a happy surprise.

I quit grains because I had been having issues with pain, headaches and left arm and neck. This pain or other, grew. Eventually I had pain everywhere. As a bonus rashes was controllable, days became at least two hours longer, I didn't feel sick any more, my brain woke up and it was easier to remember everything even though it's not perfect yet. I wasn't constantly thirsty, nor tired nor constipated nor cold. It was easier to move around too, smoother movements, more energy (used to have no reserve what so ever), more flexibility and so on. No pms nor menstrual cramps.

I honestly never knew how affected I was, since most of it was my normal state of being.

I did get terrible pain in stomach and back when glutening myself last time, which I didn't have before. 

This picture shows the difference between being good at keeping strictly gluten-free, accidentally being glutened by derivatives, and purposely gluten myself to see if I made it all up. 

Next pictures will show the changes of my atopic dermatitis when glutened, with time displayed. They will also show different kind of rashes that occur. 

[Iiv]

44 minutes ago, Iiv said:

 

 

 

 

[Iiv]

35 minutes ago, Iiv said:

 

This picture shows how the skin dries out and falls off. It's hard to see how the skin falls off on picture since its just tiny pieces.

Feeling: begins with itching within one hours. Then its like a really bad sunburn with mosquito bites and bug bites. It really burns, gets stiff and it hurts to move around or to lean againstsomething.

But I figured that it worsens for three days, before getting better. I still feel have some rashes though, a week later. And am still quite worn out most of the time. (I sleep a lot if I fuel myself with gluten, like 16 hours no problem but on average and hopefully at least 10. Still exhausted all day. When healed I sleep on average 7, but never more than eight. Fully rested and ready for marathon) 

 

 

Sorry for this one, displaying a variety of different rashes throughout glutening. Some I had completely forgotten about.

 

[Iiv]

33 minutes ago, Iiv said:

 

 

 

Fascinating to go through all those long forgotten issues. I still feel a burn on back and cheek, itching on arms, ears and head mostly. No, this is not something I would want to do again.

Unfortunately I cannot give any pictures of before going gluten-free since I didn't want show them back then. But most of them is covered here, in one week, milder.  

[Misitch10]

So I’ve been getting this on again off again rash since I was 22 I’m 28 now. And it’s been diagnosed as shingles, eczema, staph, and other things. But I saw one doctor who said DH and now is retired and my new doctor has no clue what DH is or Celiac. I was hoping to share to photos with the group and maybe get some feed back. These rashes are extremely itchy, blister and ooze. 

[kareng]

9 minutes ago, Misitch10 said:

So I’ve been getting this on again off again rash since I was 22 I’m 28 now. And it’s been diagnosed as shingles, eczema, staph, and other things. But I saw one doctor who said DH and now is retired and my new doctor has no clue what DH is or Celiac. I was hoping to share to photos with the group and maybe get some feed back. These rashes are extremely itchy, blister and ooze. 

If you have been diagnosed with DH, are you strictly gluten-free?  Wouldn’t you old medical records show that you had the skin biopsies and the results were DH?  You may have to take you biopsy and pathology report to a dermatologist to get some help.  Because DH should go away gluten-free , but sometimes people need a short course of a drug called Dapsone to help get it completely gone.  

[Misitch10]

51 minutes ago, kareng said:

If you have been diagnosed with DH, are you strictly gluten-free?  Wouldn’t you old medical records show that you had the skin biopsies and the results were DH?  You may have to take you biopsy and pathology report to a dermatologist to get some help.  Because DH should go away gluten-free , but sometimes people need a short course of a drug called Dapsone to help get it completely gone.  

I was never diagnosed. The Dr. that thought i had the DH retired before any testing was done. I haven't been gluten free because i was never actually diagnosed but the rashes are coming more frequently now

[kareng]

33 minutes ago, Misitch10 said:

I was never diagnosed. The Dr. that thought i had the DH retired before any testing was done. I haven't been gluten free because i was never actually diagnosed but the rashes are coming more frequently now

Them go to a dermatologist and get it biopsied next to a fresh lesion.  Then you will know.  

[Meggan]

On 6/19/2012 at 6:47 PM, JaneWhoLovesRain said:

Here are my pics. (And let me also add I haven't been officially diagnosed either so I wasn't sure if I should post or not but since the above two posters are in the same boat I decided to go ahead. I do hope someone with a positive biopsy will post.)

 

Some of these are rather gross, sorry!!

 

http://i1172.photobucket.com/albums/r571/janerane/IMG_2637.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2475.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2444.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2441.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2298-1.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2244.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2342.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2601.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2435.webp

 

These were taken at various stages of my rash, I'm not sure what was taken when.

 

Features:

 

Started out with one small itch on the back of my neck, took two months for it to go elsewhere and when it did it really did!!

 

Jumped from neck to both elbows, both hips, back of both knees.

 

Severe uncontrollable itching, would come in bursts. I would have to scratch and scratch for 15 mintues, then it would get better until the next burst. Would wake in night and scratch.

 

Burning feeling 1-2 days before breakout.

 

Skin was very prickly and burned, did not like having anything touch it. Taking a shower was very uncomfortable, did not like water or the washcloth on my skin.

 

At times it would feel like hives. After scratching an area over and over it would become very inflamed

 

After a couple weeks of rash on elbows, hips and knees it spread to lower back, slowly going up spine and then spreading outwards. The elbow rash spread up and down my arms about 3 inches both ways. Then the front of thighs broke out, then the front and back of shoulders broke out, then the hip and back rash spread into my stomach. Hundreds of little dots.

 

Then the whole thing started going away. Total time - 6 months. It is now almost entirely gone, just a bit in one spot.

 

Edited to add - I've been gluten free for 2+ years and think I had some cc whch caused the rash. I stopped eating the one food I thought may be giving me this. Also started taking loratadine. Rash started to go away. I then reintroduced an oreo a week (as a test to see what would happen and also because I had an appt with dermo and didn't want it to disappear entirely before I met with him). Rash came back a bit and hung around but nowhere near as severe as before. Stopped the oreo after my appt and rash continued to disappear.

Omg your description is exactly what I've been through in the last 7 weeks. First a burning then rash on elbows, then ankles, knees, arms hips and just moved to back and butt. It seems to flow around. Neg blood test for celiac. Neg for DH through two biopsies.

 

[Moosebrew]

I have finally found relief from awful scalp sores and wild crazy burning skin by eliminating gluten FROM EVERYTHING I use or eat!! I just wanna say one thing that is irritating me! I read constant forums where people are like what are you doing eating the shampoo??? Well good grief when you have exposed painful sores on your scalp and body its kinda obvious the gluten is being absorbed!!!!! I have been through a lot of tiring dr visits and mean comments about how Im picking my scalp and doing this to myself! I have to take it one day at a time and pray I dont consume gluten or iodine on accident. 

[cyclinglady]

4 minutes ago, Moosebrew said:

I have finally found relief from awful scalp sores and wild crazy burning skin by eliminating gluten FROM EVERYTHING I use or eat!! I just wanna say one thing that is irritating me! I read constant forums where people are like what are you doing eating the shampoo??? Well good grief when you have exposed painful sores on your scalp and body its kinda obvious the gluten is being absorbed!!!!! I have been through a lot of tiring dr visits and mean comments about how Im picking my scalp and doing this to myself! I have to take it one day at a time and pray I dont consume gluten or iodine on accident. 

I definitely believe that Celiacs who have DH must very very strict.  Super strict.  So glad that you found relief!  

[NNowak]

I’m prone to DH, too. Thus, I avoid gluten in my cosmetics when I’m dealing with a flare. Anything around the eyes is especially irritating all the time, so I rarely wear makeup. Not sure why any physician would think or even verbalize that these conditions are purposeful. I’ve experienced that, too. Glad you have it figured out!